When I Picture Myself Being Included, I Don’t See Myself Without My Disabilities

I want to live in a world where my existence is just accepted. I don’t want to have to undergo drastic physical or neurological changes to be perceived as a normal part the world. When I imagine myself in an inclusive and accepting world, I see myself as me unchanged, still disabled but simply in a world where that does not matter.

And yet this is not what people think I should see. This is evidenced by this video, produced for World Down Syndrome Day

In the video, a narrator talks about her life aspirations and goals while the actor Olivia Wilde lives them out. The implication is that the narrator cannot do those things for some reason. That reason is revealed at the end to be because she has Down Syndrome (DS). The narrator concludes with “This is how I see myself, how do you see me?”

The intent of the video is to convey that people with DS should be able to do all of the things talked about in the video. Unfortunately the way that message is delivered is deeply misguided.

It frames the narrator as wanting not only to be accepted and to have opportunities but seeing herself achieving them without Down Syndrome. It looks a lot less like the intended “I want to have what you have” and more like “I need to be fundamentally different to achieve acceptance and opportunity”.

It suggests (though the producers object) that people with DS should want to be Olivia Wilde rather than themselves. From a larger standpoint it says that disabled people generally should see themselves as not being disabled.

It is unfortunate that the producers of this video felt that it would be more effective to have a nondisabled celebrity play out the life and dreams of someone with DS. Besides completely missing the mark on their stated intentions, the people who produced this video lost the opportunity to model how acceptance and inclusion can look.

The video Would have been far more poignant and entirely less infuriating if it had shown the narrator engaging in the activities she described rather than Olivia Wilde.

The use of Olivia Wilde completely undercuts not only the need for disabled people to have opportunities and acceptance because no one questions a beautiful celebrity being able to do those things. People do however regularly question not only whether disable people can do something but whether they should be allowed to.

Sure the nondisabled viewer may finish watching that video and think “of course people with DS should be able to do all those things” but the sentiment isn’t likely to lead to action because without a clear guide what passes for acceptance and opportunity will be defined by nondisabled people. I promise you it will not look like the images of Olivia Wilde with someone with DS swapped in.

It’s interesting that this video came out around the same time as the short film “Guest Room” starring Lauren Potter did.


<p><a href=”https://vimeo.com/120125960″>Guest Room</a> from <a href=”https://vimeo.com/joshuatate”>Joshua Tate</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

This film clearly illustrates why relying on giving nondisabled viewers “the feels” is not going to be effective because it shows so clearly how the reality of people with DS makes nondisabled people uncomfortable. Not just people like the woman in the hair salon who utters “you’re so good with her” but the people closest to the protagonist and her boyfriend. His parents are really uncomfortable with the idea of the two of them becoming parents. Particularly if the baby also ends up having DS (for more on why “Guest Room” is amazing click here).

Charities and nondisabled advocates have been exploiting people’s immediate gut reactions for decades. It is really easy to get people to think “of course the narrator should be accepted”. It is a far harder thing to actually get them to actual acceptance.

This is why it is so important to actively confront the real discomfort that society has with the reality of the full participation of disabled people in all aspects of life, as “Guest Room” does brilliantly. It is also equally important to model and show disabled people participating and being accepted.

When we dream about a better more inclusive reality, we shouldn’t show the status quo and suggest that people who don’t usually fit in should have that too. We should show a world where they actually do.

Or is that really too hard for you to imagine?

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No, I Will Not Agree to Disagree: The Prevalence of Platitudes in Disability Social Justice Discourse

I’ve never liked the phrase “agree to disagree” Much of this just stems from my self-absorbed desire to be right and acknowledged as being right. In practice, it does have some practical value, particularly when dealing with someone whose ideals are diametrically opposed to your own. Sometimes it’s just easier to not discuss some topics with certain people to avoid blow out fights that will never be resolved.

That is not to say that people should agree to disagree in all circumstances where there are ideological disagreements or social change would never happen but I think it holds a valid place in scenarios where the disagreements don’t lead to the continuation of oppressive or dangerous outcomes. Like deciding not to discuss the economy with your conservative uncle at Thanksgiving dinner.

I am instead going to talk about the use of “we should agree to disagree” where people’s ideals are generally aligned but one party doesn’t want to deal with the reality of the situation.

I see this quite a bit in discussions between disabled people online.

The scene:

A frank discussion of a specific social justice issue pertaining to disability is taking place. People are describing the reality of the negative impact of a particular oppression (ex. silencing the voices of disabled people in favour of nondisabled voices or the very real social rejection of disabled people by nondisabled peers)

Enter into this scene a disabled person (we’ll call them the late comer) who often self declares as “not wanting to deal with negativity” who then tries to refocus the conversation not on solutions but rather a generalized feel good statement like “I want to believe that human relationships are based on love and respect and disability shouldn’t have negative consequences in this scenario” This is usually followed up by an anecdotal story where a nondisabled person didn’t reject a personal relationship with a disabled person. This anecdote is then defended as the norm.

When the other disabled people not only share their own stories of rejection but present evidence that social exclusion and rejection is widespread. The concept of agreeing to disagree is floated by the late comer who just wants to believe in the goodness of people.

I humbly dissent. The issue with this scenario is that everyone is generally on the same page in that even the late comer, likely wants a better world for disabled people and are likely aware that the world is far from equal for us at the moment. I however have very little tolerance for people who enter activist spaces and offer platitudes as though they are solutions. It’s the ignore the problem and it will go away method. It is also entirely ineffective.

I will not pretend the world is a better place than it is, in hope that my positivity will become a reality.

This platitude phenomenon was particularly prevalent during #CrippingTheMighty where disabled activists were discussing the poor representation of disabled voices in mediums that purported to represent us. All of a sudden we would get replies like “I just think disabled people need to think positively”.

If you asked for more information or how their response related to the purpose of #CrippingTheMighty you would get more platitudes about positive thinking or that trying hard would lead to success. In this case the platitudes weren’t even focused on the topic at hand.

I suspect these sorts of things happen for a variety of reasons. In the first scenario the person likely feels like generalized discussions of nondisabled people rejecting people with disabilities somehow reflects on their anecdotal story that doesn’t match the dominant narrative. The idea that people leave disabled people with disabilities is uncomfortable and they may not want to contemplate what that might mean in their lives.

In terms of people who just throw random platitudes into activist discussions to try and shut them down, the cause is harder to pin down. A lot of it is likely getting involved in a conversation they haven’t taken the time to fully understand.

I also think that the excessive use of platitudes in disability discourse by disabled people is tied to an internalization of oppression. Many of us grew up in situations where we were denied accommodation or had it overtly suggested that not taking advantage of available accommodations proves that we are weak and to get by without does us credit. This go along to get along mentality is valorized. If we live a life with no or few accommodations we are told that we are better and stronger than those who do need and use them.

We are told not to rock the boat and to be suspicious of people who do.

The problem here is that if you were to ask either of these groups individually specific questions like,

Would you like to see more disabled people on TV?

Would you like there to be more job opportunities for disabled people?

Would you like disability allowances to provide more than enforced poverty?

Would you like public spaces to be more accessible?

and other questions of that nature, you would get far more yeses than nos.

The latter group discussed is harder to deal with because they can’t seem to articulate a position if you challenge the platitude, you just get more platitudes. They also aren’t even engaging with the discourse in a way that indicates that they know what’s going on. I don’t have a way to fix this though I do think it’s important to start bringing more people into activist discourse and fighting the fact that disabled people are far to often raised on platitudes and shielded from the reality of the world.

In terms of people who do actually engage with the topics at hand but counsel positivity over engaging with reality, at least you can point out the possible positive benefits of dealing with a negative reality and trying to change it.

We need to start creating strategies to include people in activist spaces that they aren’t necessarily comfortable in but whose outcome will impact them. I just don’t think agreeing to disagree will have a positive outcome for anyone.

We need to start combating the overwhelming use of platitudes as universally acceptable advice to disabled people or platitudes as world view.

 

Proof that “Positive” Euphemisms for Disability Just Don’t Work

In the last couple of decades the language surrounding disability has become very fluid, less specific and just generally vague because “disability” is seen as a dirty word whose associations have negative affects on the people to whom it’s applied. In a move that fools exactly no one supposedly positive euphemisms have been introduced to replace referring to people as disabled. Words like “differently-abled” and “special needs”. These terms are suppose to reduce the stigma associated with disability by framing disabled people with positive language.

Does it work?

Nope!

Comparisons to and associations with disability are still considered offensive to nondisabled people.

Take for example the fact that Anglophone Quebec residents (a minority in the province) warranted an apology when a provincial website referred to English language users as Quebecers with special-needs.  An error that has blamed on poor translation.

In a bilingual country, translation errors occur all the time and are usually corrected without incident. However when that error accidentally associates a large group of people with disability it makes national news.

Considering the real tensions between francophone and anglophone Quebecers this will be seen as a slight to the Anglo minority. If a possible and likely translation error that inaccurately associates a majority nondisabled group with disability causes enough controversy to be covered by the news, the term is not functioning as intended.

Associations with disability even when accidental are still causing offense even with so called “positive” language.

Time to do away with the misleading and lazy language and deal with the real stigma and prejudice.

When Your Disability isn’t Considered in Grade School

I have hemiplegic cerebral palsy and am on the autism spectrum. I wasn’t diagnosed with the latter until I was eighteen and had already graduated high school. In some ways the total lack of knowledge my parents had about cerebral palsy contributed to this lack of diagnosis. My extreme sensitivity to touch and textures was attributed to my CP. My behavioural issues were never linked to my hyper-sensory issues and as such was generally considered to be poorly behaved and to have issues with anger management.

So though my autism absolutely affected my grade school experience, it was not something my parents or teachers were aware of. So for the purposes of this post, I am going to focus mainly on how having CP affected my experience of government mandated education.

Doctors would often describe my cerebral palsy as mild. As far as I can tell that mostly just boils down to the fact that I can walk without the assistance of a cane or walker and can climb a flight of stairs.

Having a disability that has been labeled as mild by the medical establishment also seems to have the added pressure of being considered “not disabled enough” to need accommodations.

When disability and education are discussed it usually follows one of two streams.

Inclusive education: where disabled and nondisabled students are taught together with added supports for the disabled students.

Or Segregation: where disabled students are taught separately from their nondisabled peers.

Each group has their pros and cons and supporters or detractors.

In my case neither of these scenarios was even considered. I was just dropped into a school that had no supports for disabled students. I was one of only two students in the school with a disability. The other was in the English stream whereas I was in French immersion, so while we were aware of the other, we had little contact with one another. We might as well have been attending different schools.

Because my disability wasn’t really considered to be something that required consideration or accommodation, it was never discussed that I might face physical barriers to access the school or activities. As such when I encountered them it never occurred to me that I could or should complain or demand access. I was already being viciously bullied by the other students and was keenly aware that if I mentioned my difficulties, I would just be further separating myself from my classmates.

As I have mentioned in a previous post, one of the issues I encountered at this school was an inability to use the sinks in the school bathroom. This being the early 1990s, those motion sensor taps hadn’t been invented yet so in order to conserve water, the school installed sinks that had rounded knobs that stopped the flow of water as soon as you let go of them. I did not have the hand dexterity or strength to use those taps. It never even occurred to me that I should complain. I thought that the inaccessibility was normal and acceptable.

Other than that in those early years my difficulties came up when scissors or tracing were involved. I could not hold objects still with my weaker limb in order to trace a object or cut it with my dominant hand. I had a lot of particularly sloppy looking art projects as a child.

Gym class was generally awful at both my elementary schools but there was a situation at this first school that was particularly bad and occurred because my disability was never considered and I was expected to just be abe to do everything that my able-bodied peers could.

It happened in grade 5 which was also the year I insisted on transferring schools. The teacher had planned an alternate gym activity. We were going to ski in the playground.

All the other children put on their skis and immediately began racing down the low hill that the school was built on. I on the other hand found that as soon as I put on the skis (which were poorly sized to my small frame) that I was immobile. My left leg was to weak to get me moving. I quickly fell down. I decided the best course of action was to just stay still until the class was over. Unfortunately the teacher noticed my nonparticipation and demanded to know why.

I explained that I wasn’t able to ski but assured her I was fine and didn’t mind. She however concluded that if I couldn’t ski than no one could. Against my pleading, she recalled my classmates told them the fun was over and even pointed to me as the cause.

My peers spent the rest of the day making it very clear that they were less than impressed that I had ruined their fun.

I could have easily just played outdoors without skis, there were several sleds at school as sliding down the hill in Winter was a common recess pass time but instead, I was made the scapegoat for my teacher’s lack of imagination or consideration.

Unfortunately my move to a new school later that year did nothing to improve my situation as I became the only disabled student in the entire school, a trend that continued into high school.

While in high school, I continued to have the expected issues in gym class, where my lack of athletic ability was further highlighted because my school had added a points system to the curriculum. Our performance was publicly displayed on a chart where I was placed dead last by a wide margin. These placements were supposed to be anonymous but were most definitely anything but. The comparison was supposed to incite competition but was really more of a ranking system.

High school gym was where I first really advocated for myself but it did not come from a new found sense of entitlement to access and inclusion. It came from a real fear that if I participated in the outdoor rollerblading class that I would risk real and serious injury. I had to spend the entire class sitting in the change room while I waited for the others to return.

The class that actually had some of the worst access in high school was actually Grade 9 & 10 Science. My social isolation followed me from elementary to high school and when it came time to find a partner in science class, I was frozen out. There was an odd number of students so I was left out. I tried to find a pair who would let me work with them but was repeatedly refused. I asked the teacher to assign me to a pair but he felt that it was not his responsibility. I was thus forced to work alone. I had to try to complete experiments that had been designed for two able-bodied people alone and with only one fully functioning hand.

This continued with me underperforming my experiments until due to my lack of dexterity I burned myself with hydrochloric acid. It would have continued beyond that because my teacher remained unmoved by my obvious disadvantage but finally a pair in the class took pity on me and allowed me to work with them.

My troubles in science class weren’t over though. When we started doing experiments where our findings had to be written in charts that we had to draw by hand with a ruler to our teachers precise specifications. As I have mentioned, I don’t trace well, I can’t hold a ruler steady so my charts looked sloppy and I began to lose marks for presentation even if my findings were correct.

I explained the reason for my difficulties and asked if I could make the charts on the computer in advance and fill in printed sheets by hand. I was refused.

My request in no way threatened the academic integrity of the experiment and would have stopped me losing marks for something other than a wrong answer but I was refused and that refusal did not come with a justification.

I never complained to the school, I don’t even think I mentioned it to my parents at the time. It never occurred to me that that complaining was an option. I didn’t know I had the legal right to accommodation.

The reason I did not know this was because I had been completely isolated from other disabled people and to the adults around me this was seen as a good thing.

In an ableist society, a disabled person’s value is determined by how little effect their presence has on the nondisabled people around them. This creates a hierarchy of disability that is often internalized inside the disability community. The fewer accommodations you need or reject using despite need means you have more value. You are less of a burden.

The more obvious your disability or the more you are seen as part of the larger group of disabled peopled, the less value you have. This is a systemic problem and often leads to disabled people comparing themselves to others and finding the others wanting.

People brag about the accommodations they don’t use. This reinforces the idea that needing and accepting accommodations makes you lesser.

I categorically reject this idea because I have experienced the harm and marginalization that is the result of being denied the help I need to succeed.

My experience has also made me acutely aware of the harm that total isolation from disabled peers can cause. I never knew any better and that ignorance did not mitigate the harm I experienced through lack of physical or social access. Perhaps if I had been aware of other disabled children, I might have known to fight back against those instances of oppression where changes could be made.

In my isolation, I never knew that change was even possible.

Why saying “Everyone has some kind of Disability” is a Lie

It’s not an uncommon refrain when trying to build empathy for disabled people, just say “Everyone has some kind of disability, some are just more obvious than others. All kinds of people say this. Hell, I distinctly recall uttering myself one day during a planned day of disability education in fifth grade. A day that was not triggered by the curriculum but by my being publicly shamed by my teacher for wanting to do my science project on the physics of accessibility using the school as a model (somehow this isn’t science apparently, I’m still not clear on why though). My mother called the school to complain about my public humiliation, triggering the public education day. I still had to come up with a different topic for the science fair.

The education day in hindsight was utterly cringe worthy. As the only physically disabled student in the school (a feat only achieved because I don’t use a wheelchair) and the reason for the need of education in the first place.

I don’t remember most of what I said other than the platitude that I now advocate against. The day was otherwise filled with experiments meant to create empathy. They made us wear glasses smeared with toothpaste to emulate blindness and put us in noise cancelling headphones.

The day concluded on the students having wheelchair races around the playground. This actually only served to highlight my own disability because I’m hemiplegic and my left side is weaker than my right. I couldn’t actually propel myself forward. The best I could do was sort of turn in a circle.

My peers were never presented with stairs because that elementary oddly didn’t have any despite a universally ambulatory student population. Disabilities were just games they could put on and take off. Studies have since shown that this kind of empathy building doesn’t actually work and may do actual harm to how others perceive the disabled experience.

Hindsight being 20/20, I now cringe when I think back on that day. I also know why in my plea for acceptance to my classmates, I said those horribly inaccurate words “everyone has some kind of disability, some are just more obvious than others”. I wanted to be part of the group, I wanted to be seen as just like them. The problem is that I wasn’t and uttering those words did not give me access to them.

This was actually my second elementary school, at the first one I attended, I couldn’t even wash my hands after using the washroom. The sinks in that school were designed to conserve water and it was before the days of motion sensors. You had to keep holding on to the round tap for water to flow. When you let go the water stopped. My left hand was to weak. I could therefor only wash my left hand but not my right.

At both school’s I attended gym class was often a nightmare, I was always picked last for team sports (yes I know, not a uniquely disabled experience). Social exclusion got worse when we started learning volleyball. I was physically incapable of underhand serves which were mandatory. Instead of allowing me to skip serving or teaching and allowing me to serve overhand, I was paired with the nearest student who would balance the ball in front of me while I swung at it. This is not an effective serving technique and my peers resented having to do it. I know because they were vocal about it. I was horribly bullied for this and any other excuse the other kids could come up with. This was the reason I changed schools. Not because my first school was inaccessible but because of bullies. A problem that was unfortunately not solved by changing schools.

People resent (then and now) that I and other disabled people do things differently or are incapable of some tasks. I am also on the autism spectrum (I wasn’t diagnosed until I was 18) which can be accompanied by learning disabilities, which is true in my case. After getting academic accommodations in university my grades improved significantly. One of my accommodations was to have someone take notes for me so that I could concentrate fully on lectures and discussion. People who found out would often remark “of course, you do better with a note taker, everyone would” This is actually not true. Generally note taking improves an individual’s retention of the material, particularly if those notes are taken with pen and paper. You are made to feel that you are getting an unfair advantage when in fact you are just rectifying a noted disadvantage. I was once told by a peer who discovered I had a note taker (these things are supposed to be confidential but rarely remain that way) that I shouldn’t be allowed in university if I couldn’t do things exactly the same as everyone else.

I could go on with so many more examples of how being disabled results in both physical and social barriers to accessing public spaces and common social experiences like public school and university. These types of experiences are not exclusive to me, they are common experiences of disabled people everywhere and they often get worse or have more major consequences than public humiliation and rude comments.

So what does this all have to do with the line “everyone has some kind of disability”? Well it’s this, Some nondisabled people internalize this rhetoric and use it to make their common place and not actually disabling problems seem like metaphors for real actual disability. Telegraph Journalist Josephine Fairley albeit jokingly wrote

“writing this from the standpoint of someone with two legs and two arms whose only (small) disability seems to be that the bit of my brain which can process instruction manuals appears to be entirely absent.”

Having difficulty understanding instruction manuals is not a disability, in fact it is a pretty common issue. She uses this as a jumping off point to condemn actual disabled people who don’t like the trend in the media of making disabled people into inspirations. I’m not going to debate that issue in this post because it’s off topic. The main point to take away here is that a self described able-bodied person is using that position of privilege to first claim kinship with disabled people over a difficulty to understand instruction manuals. She then talks over actually disabled people, treating their opinions are wrong and misguided even though they and not she have to live with the consequences and results of what she advocates for.

In my own experience people have been less tongue-in-cheek about it than Fairley is. I have had people sincerely claim that being an introvert is a disability (it’s not check the DSM V if you don’t believe me) or that their ignorance of their own privilege and its tendency to result in them expressing themselves in oppressive (not just ableist but racist, sexist, homophobic, etc.) ways must be overlooked because they can’t help it. They are both capable of knowing its wrong but unwilling to actually trying to change.

Not everyone is disabled, saying they are does not create a bond or empathy. Equating things like occasional clumsiness to a mobility impair regardless of good intentioned motives is false equivalence. This false equivalence must end because instead of helping build empathy it is actually destroying it. It is just giving non-disabled people another weapon with which they can hide behind to continue talking over us or continue to oppress us while claiming solidarity.